On Friday 28 March I attended the Duchenne UK New Horizons National Conference at the Holiday Inn in Bloomsbury, London.
This conference brought together hundreds of people connected with the muscle wasting condition Duchenne Muscular Dystrophy (DMD), including people like me who have DMD, lots of parents and carers, doctors and health professionals, and representatives from pharmaceutical companies.
I was part of a presentation about Psycho-social Needs and Education along with another adult with DMD, Benjamin. Presenting with us were Janet Hoskin, an associate professor at the University of East London and member of the RIX team, and Rory Conn who is a psychiatrist. Rory spoke about the need for psycho-social support for people with DMD, and Janet shared how her research shows that schools often ignore the non-physical aspects of DMD such as neuro-divergence and anxiety even though these are established risks.
Rory, Janet, Saul and Benjamin present at the conference
Benjamin and I spoke about our time in school, college and university. Benjamin did A levels and went to Nottingham University where he was awarded a first class honours degree in Neuroscience, which is amazing. He also talked about the support for reading that he received in school when he was little and how this ensured he didn’t get left behind. Like other people with DMD, I also have dyslexia, ADHD and borderline Autism Spectrum Condition. In school this meant it was often difficult for me to learn and make new friends. When I was younger, school gave me extra reading support with a teaching assistant, and extra Maths support.
I managed to pass all my GCSEs and then did a BTEC in IT and Software Development at college. I studied Games Design and Development at University because I enjoy making video games and playing them. University was fun and I made lots of friends and learned lots about game development. Overall the best thing about University was making friends and drinking shots before lessons!
Saul Catlin, DMD Advocate and RIX co-researcher
Connecting policy makers with people with learning difference/disabilities: developing an inclusive Citizen Science approach to digital financial inclusion
Back row: Supporter, Jack, Ajay, Andreia, Jas, Joseph, Kate, Kanchan; front row: Denise, Lee, Rufaro, Samantha and Saul,
RIX co-researchers and purpleSTARS members visited the Bank of England Museum, in collaboration with UCL’s Citizen Science Academy, to find out about how inclusive money is now, and how inclusive it will be in the future.
Our ideas were inspired by the article I Forgot My Numbers and the Machine Swallowed It Up in which adults with learning disabilities share their perspectives on the shift to a cashless society. The article was written by Paul Watts, Janet Hoskin, Radhika Upadhyay, Emma Tapley, and Gosia Kwiatkowska.
Our research questions
What is money?
What worries you about money now and in the future?
What is your opinion about the decline in use of bank notes and coins and a future where there will only be online banking and digital money.
Do we want a cashless future? If we do, or if it’s too late to stop the decline of physical money, how can we make sure financial products like online banks and banking apps are designed to be more accessible and inclusive?
We began our exploratory research into what money is by visiting the Bank of England Museum and their exhibition The Future of Money, where we met the curators of the exhibition and the museum.
We have been exploring the impact of current money worries including the prevalence of fraud. A major concern is with online scammers and phone scams where criminals convince us to invest in get rich quick schemes or where bills are paid into fake accounts, leaving people unsure about who to trust and how to protect themselves.
The closing down of many physical banks, where people can visit and get to know and trust a bank employee, was highlighted as a big loss. Using online banks, remembering passwords and negotiating complicated sign-ups were cited as problematic. The attitude of people who work in banks was discussed, that employees need to be trained to consider others, be nice and give people time to understand. When things go wrong, everyone agreed they would rather talk this through with a real person than fill in an online form or talk to a chat bot.
We like cash, it’s satisfying and comfortable to be able to touch our money. We also tried smelling it, and we liked the sound of it being crunched up. We discussed how cash – coins and notes – can help budgeting. A card is very easy to use and everyone liked that you don’t have to work out how much change you should receive. However, people also found it easier to overspend and harder to resist buying something when all you have to do is tap, tap, tap…
We want to find out what other people think about a cashless future and have been exploring how to do this in a creative way that we hope catches the attention of the people responsible for designing how money will be in the future.
The purpleSTARS co-researchers from Rix Inclusive Research will be at the Newham Citizen Science Fair on Saturday 12 April. Our exhibit will include our concept Bank of Purple Stars (BPS) an action research, creative approach to engaging citizens of Newham by asking them to deposit their opinions, worries and ideas about money both now and in the future. In return the BPS offers visitors at the Newham Citizen Fair the chance to engage in some playful games and creative activities including designing badges, banknotes, money and contactless cards.
We will also introduce ideas in development for our educational role play characters, Cyber Spender (hero) and Scamster Hamster (villain).
We will share our findings with policy makers and designers of future financial products with the aim of promoting inclusive designs as part of a more inclusive digital financial future.
On 18 February 2025 Ajay and Craig represented the Rix team at the launch of the report Connect to Success: Technology and Employment Support for Disabled People. The report was written by Robert McLaren from Policy Connect. The launch event took place at the House of Lords with Lord Shinkwin and Sir Stephen Timms MP, Minister for Social Security and Disability.
This report gives examples of how we can improve people’s use of and access to ATech (Accessible Technology). ATech includes resources like voice recognition software, screen readers, reading guides, and recorders. Recently, Artificial Intelligence has been incorporated into ATech to make it even more powerful and useful.
ATech is not just something that it is nice to have. For many people it is the difference that makes it possible for them to do their work and communicate with friends and family. It is life changing and essential. Not everyone has access to these technologies, and this means people are missing out on living their life to the full and having the chance to work.
Craig and Ajay at the House of Lords
The Government’s Get Britain Working White Paper was published in November 2024. It announced a new long-term ambition to achieve an 80% employment rate, with 2.1 million more people in work. The Connect to Success report explains how more people could get into the workplace, if only they had the ATech they need.
The report made three suggestions about how this could happen:
People looking for work should be helped to explore how ATech could help them
A new national ATech support centre should be set up to share successful projects and get people in the ATech community to work together to solve problems and develop innovative solutions
When people are leaving education and looking for work, we need to get the right support in place, so people have all the ATech they need as they begin adulthood and start work
Putting Assistive Technology at the heart of the UK’s policy agenda
Rix Inclusive Research has been working hard to put some of these recommendations into practice over the last few years.
We celebrate the fact that our team includes co-researchers with lived experience of difference/disability who use accessible technology to play an active role in delivering projects at RIX. We recognise the power of lived experience and person centred working, and we build this into our projects, our events, and our software.
For example, our RIX EasySurvey software is a survey building tool that gives everyone the chance to share their views with its easy-to-use, accessible interface. Our RIX Wiki software provides an accessible About Me space that enables people to communicate using video, sound, pictures, and words.
We recently hosted an inclusive hackathon. ATech ideas like our Robo ramp were developed at this event by teams of people with and without disabilities. Our Robo ramp concept helps to make public transport more accessible and inclusive. Having ATech at work is critical but getting to that place of work is important too!
We welcome the Policy Connect report and as members of BATA (British Association of Accessible Technology) we look forward to working together with disabled people, organisations, and Government to co-produce the tools that people need to enjoy their life and achieve their goals.
Ajay’s thoughts
Accessible technology is really important for me at work – I use a RIX Wiki to create a website that tells people about my life and my skills. I can record my voice on the Rix Wiki to help people learn about my life and my job
ATech helps us to connect to each other
It is important to learn how to use ATech properly so you can use it to communicate with people and your voice can be heard
ATech means that I can work independently, and I don’t need other people to help me do my job
We are excited to announce that the Rix inclusive hackathon is returning in summer 2025!
The hackathon is an event where we talk about challenges faced by people with lived experience of disability and difference, and then think of creative ways to solve them, together.
You can read about RIX Hackathon20 and watch our video of last year’s event to give you an idea of how exciting, creative and inclusive the day was.
In December 2024, I had the privilege of travelling to Luxor, Egypt, with Ajay, our brilliant Wiki Master, and three students with lived experience of learning differences and difficulties. Our mission was to represent the University of East London at the Disability Awareness Symposium organised by the Egyptian Ministry of Education.
This symposium brought together representatives from universities around the world to exchange ideas, share best practices, and work towards greater inclusion.
The central aim of our participation was to raise awareness about the RIX approach to inclusion and explore how our methods could inspire change in higher education systems globally. I was honoured to deliver a keynote lecture, Barriers and Solutions: Transforming Education for Inclusion, which emphasised the importance of accessible tools and technologies such as the RIX Wiki, our multimedia advocacy approach, person centred practice and the collaborative partnerships. In my lecture I highlighted the power of multimedia advocacy and accessible technologies to amplify the voices of people with disabilities. I also discussed the need for building more inclusive environments and the need for cross-sector collaboration to create a more equitable future for all.
Ajay and Gosia presenting at the symposium with interpreter and signer
This presentation coincided with the Disability Awareness Month, a period dedicated to reflection and action on fostering inclusivity. Sharing our expertise during this significant event gave us an incredible opportunity to start a dialogue with the Egyptian Ministry of Education and other universities. Together, we explored how the RIX approach could be embedded more firmly into their higher education systems, ensuring greater opportunities for all members of society.
Beyond the conference, the trip offered our group a rich cultural experience. The students had the chance to visit some of Luxor’s most iconic historical sites, including the breathtaking Karnak Temple, Luxor Temple, and the Valley of the Kings. For many, this was a journey of discovery, growth, and self-reflection.
We had the chance to visit some of Egypt’s historical sights including the Luxor temple
The group supported each other through various challenges, ensuring that everyone could fully participate and make the most of this experience. It was heartwarming to see how teamwork and mutual encouragement empowered each individual to overcome obstacles and thrive.
The group supported each other through various challenges
The students shared their thoughts on what the trip meant to them
“This was my first trip without my sister. I loved it” Esther
“I am so happy I got the chance to be part of this trip. It was awesome!” Adrianne
“For me, this is a life-changing experience. I never thought I could do the things I have done. The trip boosted my confidence and inspired me to do the things I enjoy again.” Ayo
This visit marked the beginning of exciting partnerships with the Egyptian Ministry of Education and opened doors to discussions on how inclusive practices can transform education. We are proud to have shared the RIX approach and to have planted seeds for future collaboration. The trip also reaffirmed our belief that inclusion is not just a goal but a journey—one enriched by cultural exchange, mutual learning, and a shared commitment to equity.
As we reflect on this incredible experience, we look forward to building on these relationships and continuing to create opportunities for all, ensuring that no one is left behind.
Gosia Kwiatkowska, Associate Professor, RIX Director
Rix Inclusive Research has completed an exciting project in partnership with Local Authority Virtual Schools in Medway and Newham.
In England, every child in care is required to have a Personal Education Plan (PEP). This plan records what is going well in school and what things could be better. It clearly sets out targets and ambitions for the year ahead. The child usually inputs to this plan via a written document, often responding to questions like ‘What is your favourite subject, and why?’
Our project explored how children could answer these same questions, but via a Rix Wiki as an alternative to a written document. In a Wiki, you can respond with voice, words, photos and videos. It’s a fresh way to have your opinions and views heard.
Using multimedia advocacy at personal education planning (PEP) meetings
The project generated lots of responses from the children. They enjoyed using the Wiki as an alternative to written responses. The Wiki provided an accessible way to communicate their successes and challenges.
“I loved the fact that it had all forms of media. I could record my voice. I could take a picture. I could type as well.” – Child
The children expressed how they used emoticons in the Wiki to share their feelings, and that they found that the Wikis helped to communicate and express their emotions in a way that they could relate to.
“They liked the emojis, to add different images to the text.” – Achievement officer
Rix Wikis from Newham and Medway
How did professionals react to the Wiki at the PEP meeting?
The project also explored the impact of the Wiki on designated teachers, social workers and other adults at the PEP meeting. The adults told us how much they learned about the child through the Wiki. Gaining a better understanding of the child and their life creates greater understanding, empathy and compassion.
“The adults in the PEP meeting thought it was great and said it was a lovely way to learn all about the children and what they had been doing. They said that it was obvious that this method of completing the consultation had been more motivating for the children and so should be encouraged.” – Designated teacher
A designated teacher explained how well the Wiki captured the voice of the child, because it offered different ways of recording and capturing their feelings and opinions.
“Using technology helps engage the learner and it helps to capture the learner’s voice in a different way.” – Designated teacher
Many of the adults commented on the child’s active engagement and participation in the meeting, enabled by the Wiki. It was great to hear that technology helped to bring the child into the centre of the meeting, which was, of course, all about them!
“I also noticed that this was the most animated these children had ever been for sharing their consultation in a PEP meeting – they were happy and relaxed andlaughed when a page came up with a funny picture or explanation – it was lovely to see!” – Designated teacher
Where next?
The children gave us lots to think about and take away! They have asked for some changes to the software, to personalise their Wiki even more. For example, they would like to be able to create and apply their own background images to the Wiki.
The project also explored how the Wiki initially took a little longer than the written form to complete. However, updating the Wiki, after the initial set up, would take around the same time, as the child would be updating the information rather than starting from scratch.
Want to learn more?
If you work in a Virtual School or with children in care, and would like to learn more about this project, please contact the team at RIX. We can tell you more about RIX Wikis and we can show you how they could transform PEP meetings and supercharge the engagement of children as they take a more active role in planning their future.
This project was funded by the UEL East London Impact Scholars Award (ELISA).
The project was led by Craig Wilkie with support and guidance provided by Ajay Choksi and Dr. Janet Hoskins.
We have used the term children in care in this article. Some local authorities and organisations may use the term looked after children.
This year’s Disability History Month, which runs from 14 November to 20 December, focuses on the themes of disability, livelihood and employment.
Disability History Month (UKDHM) is an annual event that began in 2010 to raise awareness about the history and contributions of disabled people, as well as the ongoing struggle for equality and human rights. This event focuses on promoting a deeper understanding of the barriers faced by disabled individuals.
The month was established by Richard Rieser, a prominent disability rights activist and educator, to create a platform for celebrating the achievements of disabled people throughout history while addressing the discrimination they have faced. It is also aimed at fostering a better understanding of how societal attitudes toward disability have evolved.
Each year, UKDHM highlights a specific theme, such as education, access, or the role of disabled people in historical movements. These themes often connect disability to broader social justice issues, emphasizing the intersectionality of disability with race, gender, and class.
The initiative has grown to involve schools, universities, community groups, and workplaces, providing opportunities for education and reflection on how society can work towards inclusivity and equality for everyone.
UN Convention on the Rights of Persons with Disabilities alongside UN Sustainable Development Goals
This year’s themes are disability, livelihood and employment. Although the figures for the employment of disabled people overall have crept up to 51%, those for the employment of people with a learning disability are at a woeful 5% – as compared to over 80% employment for working adults.
While many things may have improved for people with learning disabilities (1.5 million in the UK according to Mencap), access to employment is not one of them. Working and having a sense of purpose has a positive impact on a person’s health and wellbeing. As a society, we need to work out how to give this same opportunity to people with learning disabilities because being out of work with no sense of purpose will have a correspondingly negative impact.
Here at Rix Inclusive Research we practise what we preach! Our Wiki Master Ajay Choksi has been working with us since 2007, and we have a growing team of co-researchers with a lived experience of disability/difference. An inclusive workplace is a happier workplace, and we all learn from each other. Maybe this is the message we need to be sharing with businesses and services who are yet to embrace the reasonable adjustments necessary to be truly inclusive.
We want to be able to be noticed, we want to be able to be treated as a member of society and not diminished. It’s about just not treating us as though we’re an afterthought, but treating us as you would with every other person in the community.
Danny French, advocate for people with learning disabilities and autism, Havering Council
The Professional Records Standards Body (PRSB) develops standards outlining how information should be documented and shared in digital health and social care records.
Standards are based on evidence and research and agreed by professionals, carers and people who use services.
The About Me standard contains the most important information a person wants to share with professionals in health and social care. This information might include how best to communicate with the person, how to help them feel at ease, for example at hospital appointments, or details about how they like to take their medication.
As a parent carer of a young person with complex health and care needs who has been using the RIX Wiki for over 10 years, I am delighted that this software has achieved the highest level of conformance with the About Me standard. The RIX Wiki’s simple, easy to use features make it accessible to those with learning disabilities with the capability to upload pictures and videos (recommended in the Standard) to explain what’s most important to them, ensuring true person centred care.
The RIX Wiki is now recognised as a Quality Partner by PRSB
It’s also recommended that the About Me section should be prominently displayed in a shared care record as it is important information about the person relevant to all care and support providers. I was delighted to deliver the keynote speech at this year’s Shared Care Record Summit in Birmingham where I stressed the importance of reasonable adjustments in hospital and how sharing About Me information can really make a positive impact on the hospital experience as well as on on-going care and support in the community.
I’m very excited to continue to follow the RIX software journey now that conformance is in place, and I hope that Shared Care Record Systems can see the real potential of interoperability with standard compliant software to ensure that About Me information is truly available wherever and whenever care needs to take place.
At the University of East London (UEL), social work students are offered more than just classroom-based learning. As part of their journey towards becoming compassionate, capable social work practitioners, first-year students engage in a unique experience – the Communication Café.
Over the last three years, this practical activity has been a cornerstone of their communication skills training. By working directly with individuals who have lived experience of learning disabilities, students not only develop essential skills but also learn the true art of advocacy.
Participants sat at different tables to have conversations
The Social Work Capabilities Framework emphasises the importance of communication as a core professional capability, particularly in understanding the diverse needs of individuals from various backgrounds. The Communication Café exemplifies this, offering students the chance to engage meaningfully with people whose communication styles may differ from their own.
Social work is also about building relationships and creating spaces where everyone feels heard, understood, and valued. Here at UEL we benefit from a body of students from diverse ethnic and socioeconomic backgrounds and students already learn a lot from each other, as the ability to communicate effectively across those differences is crucial. The Communication Café plays a vital role in nurturing these skills by providing a supportive environment for students to practise real-world communication techniques. Working with individuals with learning disabilities teaches them the importance of active listening, non-verbal cues, and adaptable communication strategies.
Lively and engaging conversations led to greater empathy and understanding
This experience goes beyond just learning the mechanics of communication, it helps to foster empathy, a deeper understanding of lived experiences, and the recognition of people’s strengths. As one of our guests, Jas, a self-advocate from a local residential setting has pointed out, “No one is normal, everyone is unique. Uniquely special. Everyone has a disability in a way, whether you admit it or not.” This really resonate with us as it captures the essence of social work so well, appreciating the individual beyond their challenges and advocating for their rights and inclusion.
Students and self-advocates were able to practise their listening skills
Our Communication Café is a testament to UEL’s commitment to practice-based learning. As students sit down with individuals from a local residential setting, sharing their stories over tea and biscuits, they learn how to navigate conversations, interpret non-verbal cues, and build trust. These skills are crucial for social workers, as community engagement is a core requirement for effective practice.
Coming here (UEL), and meeting people like you is an encouragement for us. Going to meet new people is nervous for me.
Jas – self-advocate, Airthrie Homes resident.
This is our fourth week, we are still getting to know one another, we have been introduced to the advocacy pathway, and you coming here today has been an eye opener for me – to the good times, the challenging times, the fun times. I am really glad you’re here today and I hope I get to come to your home and work with you all.
UEL Social Work student
It was really nice to meet all of you and hear about your experiences, I learnt a lot about each of you, thank you for being so motivational
UEL Social Work student
I’ve had a really great time getting to know everyone, I personally learned a lot from Jas and Joyce, they were very insightful and helpful in giving us an opportunity to see what it’s like on a very personal level, I am really grateful for that
UEL Social Work student
First of all, I would like to say thank you for coming, it’s been delightful. Personally, I have learned a lot of new things and learned a lot of new skills in particular – non-verbal skills, listening to you and the way you presented yourselves; eye contact was one of the great skills I learnt from you. I will definitely be taking what I have learned to my placement, thank you
UEL Social Work student
The Communication Café 2024 is more than a learning activity — it’s an opportunity for future social workers to connect, learn, and grow in empathy and understanding.
Everyone has a story to share!
There is often a multi-sensory element to our events!
To celebrate Advocacy Awareness Week 2024, we’re sharing a blog from Nicola Grove, founder of Open Storytellers and Storysharing.
Photo of Nicola Grove and an AAW24 logo
In this blog Nicola tells us why small personal stories are so important in advocacy.
Rix Inclusive Research is working with Local Authority partners to trial the use of Rix Wiki software with children and young people in care. In this exciting project, we have worked with Local Authority Virtual Schools in Medway and Newham.
In England, every young person in care is required to have a Personal Education Plan (PEP). This plan records what is going well in school and what things could be better. It clearly sets out targets and ambitions for the year ahead. The young person usually inputs to this plan via a written document, often responding to questions like ‘What is your favourite subject, and why?’
In our project, we explored how young people could answer these same questions, but via a Rix Wiki as an alternative to a written document. In a Wiki, you can respond with voice, words, photos and videos. It’s a fresh way to have your opinions and views heard.
I loved the fact that it had all forms of media. I could record my voice. I could take a picture. I could type as well.
Secondary aged student in a Medway school
The initial feedback from the professionals in the Children in Care teams has been fascinating. Young people appear to enjoy using Rix software and are proud to showcase what they can do and what they have achieved.
Personal Education Plans in the Rix Wiki format
Paige Alcot, our research assistant on the project, reflected on the evidence and outcomes from the work with the students.
After working on this project, I noticed a few universal successes, like children feeling empowered in their self-expression and excited to show those around them what matters most to them. These sentiments were echoed by the people who provide them with one-on-one support, being able to relate what the child added to their Wiki to experiences they’ve had working together in the real world. Overall, the Wiki does a great job of providing a holistic picture of the individual dictated by their vision, giving each child a voice.
In the next part of the project, we will be exploring how the Wiki worked during the PEP meeting – how social workers, teachers and carers reacted to hearing the child’s views and hopes and dreams in their own words.
So this makes me feel better because people get to hear what I need to say without me feeling uncomfortable.
Secondary aged student in a Newham school
This project has been funded by the UEL East London Impact Scholars Award (ELISA).
The project is led by Craig Wilkie with support and guidance provided by Paige Alcot, Ajay Choksi and Prof. Janet Hoskins.
We have used the term children in care in this article. Some local authorities and organisations may use the term looked after children.
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